Wednesday, August 30, 2006

Thanks, Pa

It seems that Bud was in better hands than I knew today.

I was not the only person in the family who spent the day in a panic. My husband, my parents, and I spent most of the day calling each other - how do you think it's going? what have you heard? here is the latest... We realized this morning that in Bud's almost 7 years he has never once spent six continuous hours away from the four of us. School days were half-days; babysitters were short-term. In his entire life, until today, Mom or Dad or Nana or Papa always appeared before four hours were up.

So today was difficult for all of us. My husband and I were at work, watching the clock and counting the seconds. My parents, suddenly under-employed, spent the day bumping into each other as they meandered through a strangely quiet house. And as they began to compare notes, they discovered that they'd each started the day in a similar way - by having a silent conversation with my grandfather, Pa, who died thirty-one years ago today, on my ninth birthday.

"I can't be with him today," my father said, "So I need you to be."

"Stay with him," my mother said, "And bring his siblings along for moral support."

It's really no wonder that Bud didn't need Gramps' hat on his head for his first day of first grade.

He already had Pa's hand on his shoulder.

The good hands people

I'm bumping the threat level back down to blue.

Today was the first day of first grade. Bud and I woke around 5:15, which gave us plenty of time to get ready to be out the door by 7:30. For most of the morning, Bud was upbeat and positive; he sang several verses of "To School We Go" from the Blue Takes You To School Blues Clues DVD. He even posed for first-day-of-school pictures.

His anxiety surfaced when it was time to leave the house. He'd been watching an episode of Clifford's Puppy Days in which Jorge the dog was nervous about a visit to the grooming shop. Bud echoed Jorge all the way out to the car: "I don't want to gooooooooooo!"

His anxiety escalated again when we arrived at school and saw the swarms of parents and children streaming into the building. I made the mistake of parking near the front entrance, which left us no other choice but joining the swarm.

"I don't want to go," said Bud as I helped him out of the car.

"I know, sweetie, " I said. "But it will be okay."

"It will be okay," he echoed, adding the promise he hears me make so often: "If it's too crowded, we can leave."

"It will be crowded," I said. "But then all the moms and dads will leave, and it will just be kids and teachers. Then it won't be crowded anymore."

"And you will stay with me," he added, "so it's okay."

"No, I'll need to leave with the other moms and dads. But I will be back when school is over and it's time to go home."

He knew all of this. This was not news to him. The reminder may have been comforting for him. It was not comforting for me; my heart broke a little more with every word we spoke.

We walked through the hallway, Bud a pace or two behind me, being pulled along quietly by the hand. He stopped when we reached the classroom door and announced more boldly, "I don't want to go! I don't want you to go!"

I pushed him into the classroom, which was already bustling with happy children and excited parents. I heard "Hi, Bud!" and turned to see that Clay was greeting him, but keeping his distance and giving Bud space.

Bud stared at the ground and I could see that he was starting to get overwhelmed. I knew that we needed to get the transition portion of the morning over as quickly as possible. Mrs. Parker spotted us and came right over. I kissed Bud and told him that I'd see him soon, then walked out quickly as Mrs. Parker led Bud to his cubby.

My throat tightened as I made my way back through the school. I marveled at the parents who filled the hallways, chatting, laughing, and snapping pictures as though this was not the most difficult day of their lives. As I approached the exit I saw Miss Josephs, Bud's former classroom aide, who took one look at my swimming eyes and gave me a hug.

"Can you check on him?" I croaked.

"I'm afraid it might be harder for him if he saw me," she said. I knew she was right. I walked out the door feeling crushed under the weight of alone-ness. I wondered if Bud felt it too.

I made it to the car before I burst into tears.

I enjoyed a good, therapeutic cry all the way to my office. As soon as I got to my desk I picked up the phone to call the school, thinking that maybe somebody from the special ed team could make sure he was okay.

The inclusion coordinator answered, and with my voice breaking I squeaked out my request: "Could somebody just go check on him?"

"I was just there," she said. "Mrs. Parker is giving the class an introduction. Bud is walking around the classroom, but he's listening. He's not upset. He's doing just fine."

I felt the tension start to ease as the picture I'd imagined of a hysterical, abandoned Bud disappeared. Feeling a little braver, I headed off to a meeting.

When I returned two hours later, there was a message on my voice mail from his speech pathologist. "I just wanted to give you a good-news report," she said. "He just came in from recess. He had fun outside and made a smooth transition back to the classroom. He's doing really well."

About an hour later there was another voice mail on my phone, this time from his case manager: "I just passed the classroom. He's eating his snack, looking around, and smiling. I caught Mrs. Parker's eye and she gave me a thumbs-up. He's doing great."

A few minutes ago, Mrs. Parker called. The children were in the art room, and she wanted to call to let me know what a fantastic day Bud was having. "He is exceeding my wildest dreams," she said. "He's spent time at his desk, he's been writing, he's using spontaneous language, he's making eye contact, he's connecting well with the classroom aide. The day could not have gone better."

The alone-ness feeling is gone; we are in good hands.

They get it. They're invested. They're on it. It's working.

He's having a great day.

I can't imagine a better birthday present.

Tuesday, August 29, 2006

Yellow alert

You know how you read all the time about the government monitoring the flow of communication in suspected terrorist networks, looking for patterns that might indicate a mounting credible threat?

Sometimes parenting in Autismland feels a lot like that.

You can't pounce on every small suggestion of a thought that seems to be off-kilter. You have to remain vigilant, attuned to the details while staying focused on the bigger picture. What is an isolated incident? What do the patterns suggest? When is the right time to take action?

It's imperative in Autismland, as in government, that we neither over-react nor under-react. Over-reacting causes panic and paranoia; under-reacting can have devastating results.

I am beginning to recognize a slight pattern of concern in the networks I'm monitoring at Bud's school. Taken in isolation, nothing is a great worry. But it's the pattern that I'm watching and that I'm struggling to interpret.

The messages have been filtering through slowly and gently. The first, in his IEP meeting in June, went something like this:

"I don't think we should encourage him to take Gramps' hat to first grade with him. Other children don't wear hats at school."

A more recent message came through this way:

"Maybe bringing his iPod to school would not be the best idea. He might get too dependent on it. It might be better to find something that other children could use as well."

Taken alone, neither issue is important enough to make a fuss over. Bud will be fine without Gramps' hat, and he will manage without his iPod. As I explained to his teacher, Bud is incredibly flexible in his rigidity. He will, without question, need something to bring him local coherence, but he will be creative in determining what that something will be. Before he discovered Gramps' hat in Kindergarten, Bud stuffed his pockets full of plastic fruit every day. In preschool, Bud sat on the "B" on the alphabet carpet at circle time and carried around the "home" card from his visual schedule. Bud will figure out what he needs to get by in first grade; I'm not worried about that.

But, just like the government agents who monitor the networks, I feel compelled to listen not just to what is being said, but also to what is missing from the messages - to listen not just to the words, but also to the meaning that underscores them.

I need to make sure that if these statements are signs that we are veering off into different philosophical perspectives, I am ready to intervene at the appropriate time to make sure that we don't continue down these divergent paths. I will need to speak up to confirm that "encouraging Bud to be (or just act) like every other child" has not somehow snuck itself between the lines of his IEP.

Bud is not like every other child. Bud is autistic. He will go far, he will do great things, and he will still be autistic.

If Bud had spina bifida, I feel certain that no one would say, "Other children don't use chairs with wheels. In first grade, we walk."

If Bud was hearing impaired, I don't think we'd be concerned about the disparity of letting him be the only child in the room who gets to wear the cool accessory on his ears.

No one would worry that Bud might get too dependent on the wheelchair or the hearing aid.

What makes the accommodations for autism any different?

Children are smart. There was not a single child in Bud's Kindergarten class who didn't recognize that Bud was different. And I don't think there was a child in the class who would have traded places with him, who would have opted to swap the ability to make friends for the privilege of wearing Gramps' hat.

In fact, by allowing Bud to wear Gramps' hat in Kindergarten every day - by letting him literally wear his difference on his head - we gave all of the children in that classroom the opportunity to learn two very important lessons:

1. Different is not "better than" or "worse than"; different is just different.; and

2. Fairness does not equal sameness.

We also allowed Bud to learn a third, and even more valuable, lesson:

You are just right, just as you are.

I'm not obsessing over this. I'm thinking about it, certainly, but ultimately I'm keeping it in perspective. Two incidents do not constitute a pattern, especially when considered in the context of a hundred other messages that indicate that the team at school knows, understands, and respects Bud. This is not a credible threat. It's not time to start banning liquids from all international flights.

But, all the same, I think we need to stay vigilant at the scanners.

Monday, August 28, 2006

Four-ohmygod

So I'm turning 40 this week.

It doesn't sound right, 40. It's just not an age that goes with me. I'm navy stripes; 40 is orange plaid.

This birthday angst is a whole new experience for me. I've always enjoyed my birthday, or at least been too busy to notice as it zipped by. Turning 30 was actually a relief; I had recently started a new job in which all of my colleagues were in their 30's and 40's, and turning 30 made me feel more legitimate somehow.

But now I've been legitimate for ten years. Now I have colleagues who were born when I was in high school.

But it's a number, right? Just a number.

It's not just a number. Those of you who have been here, you know it's not. For those who have yet to be here, let me explain how it happens:

You spend your twenties being young, pursuing your career, falling in love, la, la, la. You spend a decade glancing in the mirror and seeing yourself smiling back at you.

Then you enter your thirties and have a young child in your life. You may have a young child who is autistic, who doesn't sleep much, who keeps you running at a frenetic pace through most of your waking hours. You try to sleep when you can, but you subsist mostly on five or six broken hours of sleep a night. In these years when you remember to look in the mirror you see a different version of yourself peering back. This you is more puffy than the real you, and has darker circles under her eyes. She often has sweet potatoes in her hair, or blue magic marker streaks on her face. She seems happy, but tired. You hope that she gets a good night's sleep soon.

After several years of looking at this person in the mirror, the day finally comes and you get a spectacular night's sleep. You wake feeling rested and refreshed and ready to take on the world. You bound out of bed and rush to the bathroom mirror, eager to welcome back your old twenties face.

And then it happens. Refreshed, rested, twenty-something you looks in the mirror and puffy, saggy almost-forty you looks back, and you realize for the very first time that it's not just that you've been tired.

This is what you look like now.

And the surprises keep coming. You start to read a column in a parenting magazine. You trust this article, because there next to the byline is a picture of its middle-aged author, an older, more experienced mom who is going to share years of accumulated wisdom with you. You start reading, and one paragraph into the article you discover that she is four years younger than you.

They are everywhere, these old-looking younger people. And, it seems, there are more of them every day.

This aging thing is confusing. It's a big blurry mess of flash-forward/flash-back. And here's the greatest irony of the whole thing: I've got less than 48 hours left of my thirties, and instead of enjoying it while it's here I keep studying pictures of my current face, examining the new crinkles around my eyes, the extra skin that seems to be growing on my neck. And I imagine myself ten years hence, stumbling across these pictures and examining them again, startled by what I see:

My god, I'll think. I can't believe how young I looked.

Thursday, August 24, 2006

Pluto, we hardly knew ye

Why does it bother me so much that Pluto is no longer a planet?

I mean, I've never been there. And it's not like I've always been meaning to go but just never got around to it, the way it was when Jerry Garcia died and I had to confront the reality that I was never going to see The Dead - the real Dead, not just Bob Weir and Friends - and that I should have made more of an effort to see them when I had the chance, and I really blew it that time in the days before cell phones when I kept circling Madison Square Garden, leaving and retrieving answering machine messages from pay phones, trying to meet up with the guy who had my ticket, and finally giving up and going drinking with friends instead. It's not at all like that.

But I am really, really upset about Pluto.

I think it's because Bud is such a fan of the planets. He's got glow-in-the-dark planets hanging from his ceiling, with little Pluto far away in the dark corner of his room. He's got a full-color, beautifully laminated solar system poster on his wall. We frequently sit in his dark room, watching his glowing planets, belting out a mean duet of the planet song from Blues Clues:

Well, the sun's a hot star;
Mercury's hot too!
Venus is the brightest planet;
Earth's home to me and you.
Mars is the red one
And Jupiter's most wide.
Saturn's got those icy rings
and Uranus spins on its side.
Neptune's really windy
and Pluto's really small.
Well, we wanted to name the planets,
And now we've named them all.

Pluto's really small. Too small, it seems.

A couple of weeks ago, when things looked a lot less bleak for The Pluto Formerly Known As Planet, I explained to Bud that there might be three new planets in the solar system.

"New planets, Mom?" he asked. "On Blues Clues?"

"Well, I guess they will have to write a new song," I replied.

"How about Teletubbies?" he said.

"I guess they'll have the new planets, too."

But, no. I haven't broken the news to Bud yet, but there will be no new planets for the Teletubbies. Just one fewer planet for Bud.

I suppose Blues Clues will still need a new song, though.

And Mary's Violet Eyes will still Make John Stay Up Nightly. But even religion takes a hit now that John has stopped Praying.

Sigh.

Well. Here's to you, Pluto. We'll miss you, old friend. But I just want you to know this:

If it had been up to me, I'd have lobbied for keeping you and getting rid of Uranus.

Wednesday, August 23, 2006

Keep on truckin'

Bud and I played trucks last weekend.

That probably sounds like no big deal. But it is. It's a big deal.

Bud and I have never really played trucks before. He has carried trucks around before. He has made the Bob the Builder character trucks act out scenes from videos. He has occassionally spent time standing at the top of the driveway with a truck and letting go, watching it roll slowly, slowly toward the street until it stopped, then retrieving it and starting over. And over. And over.

But in the mosquito-filled dusk of last Friday night, Bud and I raced trucks down the driveway - "Ready, set... GO!" We used chalk to measure how far the trucks could travel. The Oswald characters drove a dump truck down the street to go buy cards for their friends. Trucks made mechanical vroom-vroom noises. Trucks crashed into each other. Trucks crashed into trees.

We just played trucks.

Monday, August 21, 2006

Daniel Isn't Talking

I just finished reading Marti Leimbach's novel Daniel Isn't Talking, a book about a woman whose young son is diagnosed with autism.

Not a book about autism; a book about a woman.

Autism is an important character in this novel, but it plays a supporting role. Autism is the device upon which the plot turns. The star of the novel is Melanie, mother of two, whose husband, unable to deal with the reality of having and raising an "imperfect" son, walks out on his family and moves in with his ex-girlfriend. Leimbach's writing is rich and full; she creates in Melanie a character with intelligence, wit, and limitless strength, full of flaws, insecurities and fearful desperation. Melanie and I are both autism mothers, but I did not see myself in her; our lives, our families, our sons, our perspectives are different. But I did see her, very clearly - enough to wish that she weren't a fictional character so that she could be my friend.

Daniel, too, is a supporting character, though without doubt the most endearing one in the book. I fell in love with him during a scene in which he visits a shoe store with his mother, covets a pair of little girls' party shoes with sparkling buckles, and encounters a saleswoman who insists that the shoes with buckles are for girls. Only girls. Leimbach writes,

Along the wall of the shop is a pretty display of pink shelves, interspersed with Barbie logos and pictures of blond dolls. In this decorated world of carnation pink lie the shoes that Daniel wants. He sees this. He understands what the woman is reporting. Language is no longer lost on his ears. And so he goes to the dinosaur display on the boys' side of the shop and removes some of the shoes there, those big greenish-black shoes with heavy treads and prehistoric monsters in holographs on the straps, and takes them to the girls' side. He swaps the dinosaur shoes for the pretty patent-leather pumps with the buckles, the ones he so desperately wants.

"Excuse me, could you do something?" says the saleslady pointedly.

But I am fascinated by what I see before me. How Daniel knows what the trouble is, how he has been separated from his desired object by means of his gender. It seems to him a simple thing to switch the decorations. To make the shoes with the heavy tread and Velcro part of the world of girls and Barbie, and embed the sacred buckled pumps into the masculine surround of dinosaurs and jungle grass.

How can you help but fall in love with this clever boy and his creative attempts at problem-solving? As the scene continues, the saleslady scolds Daniel and reaches to snatch the pumps away from him. He bites her on the hand. Melanie reacts quickly: she buys the shoes and lets him wear them home.

I think that's when I fell in love with her, too.

Saturday, August 19, 2006

Renegade RDI

Over the past year I've spent a great deal of time, here and elsewhere, celebrating Steve Gutstein's autism intervention program, RDI (Relationship Development Intervention.) The philosophy behind RDI makes intuitive sense to me, and the work that I've done with it seems to have made a tremendous difference for Bud.

But over the past several weeks my enthusiasm for RDI has been dampened. Early this month, Gutstein unveiled "RDI 3.0," a new "operating system" that promises to revolutionize the RDI program, streamlining it, making it more easily understood and easier for parents to implement. The catch? It will be available only to certified consultants, who can then dole it out in small portions to their paying customers.

When I've read criticisms of the RDI program, they have rarely had to do with the RDI philosophy and often with the RDI business. The full RDI "protocol" as outlined by Gutstein's Connections Center, which includes a four-day parent workshop, an intensive initial assessment, and ongoing work with a certified RDI consultant, is expensive. For many (most?) parents, it is prohibitively expensive. However, I have stayed buoyed and positive throughout the past year because it seemed to me that Gutstein had built in provisions for parents who were not able to afford the full protocol. As one of those parents I have, for the past year, pieced together a "make your own RDI" program. I attended the two-day introductory workshop, purchased the 5-hour RDI DVD, read Solving the Relationship Puzzle, lurked on a listserv for parents and consultants, participated in free chats with Gutstein and his wife and RDI partner Rachelle Sheely, purchased the official RDI tracking sheets, and purchased a book of RDI activities called Relationship Development Intervention with Young Children. This was a significant financial investment for my family, but it represented a fraction of the cost of the full RDI protocol.

And it seemed to be working. I watched Bud's progression and compared it to what I saw described on the tracking sheets; to my amazement, the activities I was doing with Bud - the way I was approaching my parenting - was producing exactly the sort of development that RDI told me I should expect to see. So I was excited to hear that the new, improved and more easily understood Operating System 3.0 was going to be unveiled. I watched the listserv faithfully for reports from the conference. I began to read exciting scraps of information about the new system, and then began following a discussion thread about the high cost of RDI, the limiting of information on 3.0 to consultants, and the exclusion of those who are unable to pay high consulting fees.

That's when I got discouraged. I read comments that suggested things like: The only people who are really doing RDI are those who are working with consultants. Those working without consultants are probably doing it wrong. They may believe they are seeing results, but they are probably not. They don't know what to look for, so they are seeing what they want to see. In fact, they may actually be doing more harm than good.

The unwritten tacit subtext that I walked away with was this: Are you really saying that your child is not worth the money?

Again, nobody actually said it. It was probably my own guilty feelings that filled in the empty space. And the comments on the listserv were not made by Gutstein or Sheely - they were made by parents or consultants (the latter of whom clearly have an interest in limiting access and maintaining the status quo.)

Here's the thing. RDI is expensive. If I thought that working with a consultant and paying the extraordinarily high cost would make a significant difference in my ability to implement the RDI philosophy, I would try to find a way to do it. I'm not sure what we would do - refinance the house? max out the credit cards? But, without knowing whether or not working with a consultant would really make a significant difference in the effectiveness of the work I'm already doing, it's hard to think about putting my family in that kind of financial peril.

I'd love to have an opportunity to work short-term with a consultant to try to get a sense of how far off I am in the work I'm already doing - Is Bud really making the kind of progress I think he's making? Am I doing more harm than good? I mean, before I hire someone else to make my chocolate chip cookies, I want to know if she's going to tell me that I've been trying to make chocolate chip cookies with molasses and cinnamon, or if she's just going to suggest that I add a pinch more salt.

But that's not how the two consultants within driving distance of my house work. I had started down the path in working with one, but pulled out when my sixth-mommy-sense said "this is not the right person for us." The fact was, before she had even spent a moment in Bud's presence, before I had any indication of her style, her talent, or her ability to connect with Bud, I was expected to sign a contract hiring her for the "RDA" assessment and three months of contract service; in effect, I would be agreeing to pay several thousand dollars to a stranger, without any sense of how much difference this person would actually make to my son.

So I'm discouraged. But, really, I still love RDI. I love that it's designed to help Bud become a more flexible thinker, a broadband communicator who can "read" a situation by taking in and making sense of several streams of information simultaneously. And I really do think that the work I'm doing without a consultant is making a difference.

Last night my husband was upstairs listening to music and I wanted to let him know that supper was ready. I stood at the bottom of the stairs and shouted his name. He didn't answer. I shouted his name again.

From the next room I heard Bud shout to me, "He can't hear you!"

I walked into the room where Bud was. "I think you're right, Bud. Poor Daddy. He doesn't know that supper is ready."

"I can go talk it him," Bud said.

No big deal, right? Wrong. That brief 20-second interaction involved Bud attending to, interpreting and responding to an extraordinary amount of information. In rapid succession, and often simultaneously, Bud had to think:

Mom is shouting Dad's name because she wants to tell him that supper is ready.
Dad is not answering her because he can't hear her.
Mom is still shouting Dad's name because she doesn't know that he can't hear her.
Mom's plan is not working.
I know this, and Mom does not.
This information would be helpful to Mom.

I would like to be helpful to Mom.
I will give Mom this information.
Dad still doesn't know that supper is ready.
If Dad doesn't know that supper is ready, he won't come downstairs to eat.
Dad will be sad if he doesn't get to eat supper.
Mom doesn't want Dad to be sad.
Mom wants Dad to be happy.
I want Dad to be happy.

Eating supper will make Dad happy.
If Dad knows that supper is ready, he will come downstairs to eat.
Mom does not have another plan for letting Dad know that supper is ready.
Going upstairs and telling Dad that his supper is ready is another plan.
I could go upstairs and tell Dad that supper is ready.

I could be helpful to Mom and Dad.
That would make Mom and Dad happy.
I would like Mom and Dad to be happy.
Mom doesn't know that I have come up with another plan in which I can be helpful and make them happy.
I will tell her.

Flexible thinking. Intersubjectivity. Social coordination. Dynamic intelligence. Regulation and repair. Relational information processing. Broadband communication.

This may not technically be RDI we're doing, but I have to think that whatever it is, it's a very good thing.

Friday, August 18, 2006

Hapeness is a warm teacher

Bud wrote another letter to Mrs. Parker this morning. It reads,

Der mis purker

I am hape

Luv bud


I think Bud feels ready to start first grade.

As for me, I couldn't be hape-er.

Thursday, August 17, 2006

Second chance, first rate visit

Bud went to visit Mrs. Parker and his first grade classroom again this week. His first visit was difficult, so we weren't sure what to expect this time. But we know that, for Bud, familiarity breeds comfort, so we were determined to forge on.

Based on my experience with Bud's end-of-the-year "why is Mom at school?" dysregulation, I thought that perhaps my presence at last week's visit was part of the problem. So, this week, Nana went with Bud to visit Mrs. Parker.

As you may recall, following the first classroom visit Bud sent a letter to Mrs. Parker, which he composed entirely on his own. It read:

Der mis prker
I liek horn moeosik
Iliek read er rabbit
Luv bud

As luck would have it, when Nana and Bud arrived they found Mrs. Parker seated at the computer struggling with a problem. It seems she was trying to play a Reader Rabbit game, but she just didn't know how to do it.

Bud to the rescue.

Bud and Mrs. Parker sat side-by-side at the computer while Nana lurked in the background. Mrs. Parker handled the interaction with finesse - involved, but not too involved; allowing for the self-soothing of some perseverative mouse-clicking, gently redirecting to the exploration of a new element, then allowing for the brief return to the safety of perseveration. Success, success, success.

After a short time on the computer, Bud was ready to explore the classroom. He practiced hanging up his backpack. He practiced putting his pencil case in his cubby.

Then, it seemed, it was time to test Mrs. Parker about her tolerance for Budthings.

He introduced her to his stuffed purple Boohbah, his favorite Boohbah, the one he calls "My brudder Sumbah."

She was pleased to meet his brother Sumbah.

He acted out a Teletubbies script - silly actions, baby talk, and all.

She was just fine with the Teletubbies scripting - didn't pay it too much attention, didn't pay it too little.

He suggested that he might walk down to the Kindergarten classroom and visit his friend Mrs. H.

She said that Mrs. H wasn't there that day, but she knew that he would be able to see Mrs. H a lot while he was coming and going to first grade this year.

Success, success, success.

I was in my office watching the clock, worrying, and wondering how it was all going when my phone rang and I heard a voice I don't often hear on the other end of the phone.

"Hi, Mom. I had fun with Mrs. Parker."

And they're off.

Wednesday, August 16, 2006

I owe you one

Oh, you think you're so smart.

But, okay, I have to admit it: you were right. The second version took half the time and is twice as good.

My thanks to all who, through comments and e-mail, provided sympathy, encouragement, and suggestions for ways to achieve some local coherence. Special thanks to my brother, Uncle Penguin, whose own story of spectacular technological loss gave me some much-needed perspective.

Now is when you get to say "I told you so."

Monday, August 14, 2006

Lost time

When is the last time you had four uninterrupted hours to work on a project? If your life is anything like mine, you can't remember.

My anxiety had been building all week after I agreed to teach a course in the fall, meaning that I'd have to start planning a syllabus just as I entered the busiest time of year in my full-time job. To help preserve my sanity, my husband took Bud out for the afternoon on Saturday and I spent four focused hours in front of the computer planning the class and building a syllabus. By the time they got home I felt great, and though I still needed to do some revision I was suddenly anxiety-free. I took yesterday off, and this morning I decided to look at the document again with fresh eyes.

It's gone.

I won't get into the technical minutiae of what went awry in the downloading (but, clearly, not uploading) of files from my college account. I will just leave you with the most salient details:

Every single bit of work I did, every word I typed, every reading I identified, every assignment I constructed:

It no longer exists.

Four hours. Four rare, coveted, productive hours.

Lost.

I do have something to show for it, though: my anxiety has returned, and it's better than ever.

Saturday, August 12, 2006

First grade, second thoughts

We've been easing Bud into the transition to first grade slowly. As his Kindergarten year ended, his teacher found opportunities for him to visit his first-grade classroom. His new teacher, Mrs. Parker, created opportunities to interact with him. Over the summer we've started name-dropping the children who will be in his class (which took on even greater significance when we saw Sophie in the grocery store and she gave us the insider scoop on the make-up of first grade classrooms.)

Bud seems to be ready to make the move. He talks about going to first grade, about Mrs. Parker, and about his new classmates, which thankfully include Sophie and Clay, who is returning to our district. He's chosen a new backpack, a new pencil case, and a new water bottle. He knows it's coming and seems happy enough about it.

It seems that the gods of pupil placement have once again smiled upon us, and we are quickly learning that Mrs. Parker is another dream-come-true teacher. She called me last week because she thought it might be a good idea for her to get together briefly with Bud once a week this month to build his comfort and familiarity with her before the school year starts. She'd be leaving soon for a long weekend, she said, but perhaps we could drop by the classroom for a visit? Or she could stop by our house if I thought that might be easier for him. Oh, and while she had me on the phone, she was hoping to get my ideas about how she might be able to create a comfortable corner in the room where Bud could go when he needed a break or needed to be alone for a while. And did I think it would be a good idea to leave some space at the back of the classroom where he could get up and walk around during the activities that had the children seated for long periods of time?

Dream. Come. True.

My hunch was that visiting the classroom would be easier than having Mrs. Parker come to our house, since seeing people out of context can be dysregulating for Bud. So we set up a time, and Bud talked eagerly about the visit. We decided to bring dancing bear with us to show Mrs. Parker our fabulous creation. We were prepared.

But as we drove to the school Bud's anxiety began to build; by the time we got to classroom he had firmly decided that he would not be visiting Mrs. Parker today. I got him into the classroom, but he refused to engage with Mrs. Parker, refused to look at the books on the shelf, refused to look at the calendar she was hanging. He cried real tears, shouted loud shouts, and said he had to go home. We visited for a stress-filled ten minutes. By the end of it, Bud was puffy and blotchy and tear-soaked; I was knotted and tense and sweat-stained. But Mrs. Parker was cool and breezy and upbeat, and acted as though we'd just brought her cupcakes. She cheerfully kept her distance and even seemed sincere when she told us how wonderful it had been to have us visit. She sent us on our way with some pictures of the classroom and her home address, just in case Bud would like to send her a letter in the mail. She even reminded us to come back again next week.

Bud's usual calm demeanor had returned by the time we got home and I transferred him to Nana so that I could return to work for the rest of the day. I kissed him before I left and as he headed up the stairs to play he said, "Thanks, Mom. That was fun."

"It was fun, Bud?" I asked, following him. We sat together on a step halfway up.

"Yes," he said.

"What do you think of Mrs. Parker?"

"She's good."

"I thought she was nice, too. She wants you to visit again next week."

"Yes."

"Do you want to visit again next week?"

"Yes."

I remain in awe of that child.

Today Bud mailed a letter to Mrs. Parker. He composed it on the computer by himself. It says:

Der mis prker

I liek horn moeosik

Iliek read er rabbit

Luv bud


Horn music and Reader Rabbit: I guess now they have something to talk about during the next visit.

But just to be safe... maybe I ought to bring along some actual cupcakes this time.

Friday, August 11, 2006

Dream a little dream of me

I've mentioned before that Bud climbs into bed with us at some point every night. He usually does it quietly and without announcement. I only know he's there because I wake up with an elbow up my nose.

So I was surprised when, a few nights ago, Bud didn't slip quietly into our bed, but stayed in his own room and cried out to me: "Mama! MAMA!"

I dashed in to find him sitting up with his eyes closed. "Bud, I'm right here," I said. "What's wrong?"

"Mama! Your trunk!"

"My trunk?"

"Yes."

"Um..."

"MAMA! YOUR TRUNK!"

"I'm okay, honey. You're having a dream. Let's go back to sleep."

"Yes," he said, dropping face-first into his pillow. His long slow breathing told me he was sleeping heavily; he'd never really woken up.

It took me some time to fall back to sleep, though. My trunk? What do you suppose I looked like in this dream?

Never mind. I don't think I want to know.

Thursday, August 10, 2006

So nice

I've been reminiscing about the point at which Bud started using words to talk with us, and not just near us. He often used one of his earliest "shared phrases" when we were having a good cuddle. He'd squeeze me tight and press his sweaty little face to mine and in a breathy sigh say, "So nice." They were the two sweetest words I'd ever heard.

I told Bud about it recently while we were hugging: "When you were a very little boy and we hugged each other, you used to say, 'so nice.'"

"So nice," Bud repeated. He burrowed his face into my neck and I melted into the joy of the recreated moment.

Tonight at bedtime we were having a cuddle and I asked, "Do you remember what you used to say to me when you were little?"

He wrapped his arms around me, laid his nose alongside mine and said "So nice."

"That's right," I said. "So nice." He let out a loud blast of fake laughter, then we laid there nose-to-nose in the dark, quiet room.

Bud finally broke the silence. "I talked, Mum?" he asked. "When I was little? I talked?"

"You talked," I said. "You were quiet a lot, but you said 'so nice.'"

We said our goodnights then and I left the room, but I haven't stopped thinking about his question. Does he remember not talking? Was he aware of that difference at the time? If he was, how did he feel about it? What does it mean to him now? What does he think about his current speech patterns? Is he aware that they are different from ours? And if so, how does that feel to him?

Bud's language is a gift. It's wonderful to hear his voice. But sometimes I think it would be so nice to be able to read his mind.

Tuesday, August 08, 2006

Weirdness

I've been tagged by Autism Diva, and challenged to reveal five weird things about myself.

1. I am intensely private (which makes exercises like this almost physically painful.) It took me months to talk about my blog to anyone who knows me personally. Since then, several people have said that they've learned more about me in the months they've been reading the blog than they did in years of knowing me.

2. I loathe talking on the telephone. I adore long face-to-face coffee-sipping conversations with friends, but move those same conversations to the telephone and I start to itch.

3. I enjoy reality television. People often seem surprised by this. I must give off some sort of poseur intellectual PBS vibe or something, but give me So You Think You Can Dance any day of the week.

4. When I go out to dinner with a group of people I like to be the last person to order in case someone else orders something that sounds more appealing than what I had in mind. I especially like it when the person right before me orders something that sounds good, so that all I have to say is "I'll have that, too."

5. I have this thing with words.

An additional weird thing about me is that I want everyone I know to feel loved, included and appreciated, and the practice of "tagging" particular individuals feels so much like choosing sides in third grade kickball that it ties my stomach in knots and makes me sweat. Therefore, if you would like to share your weirdnesses, I invite you to do so. Leave a comment here so that people can follow the link to your blog. If you don't have a blog, feel free to self-disclose in the comments section here. And know that you will be loved and appreciated, weirdness and all.

The write stuff

I know I can teach.

I know I can write.

Is it reasonable to assume, then, that I could teach writing?

Fifteen to twenty first year college students are about to find out.

I've got about a month to build a syllabus and plan a 15-week course. I'm excited. I'm motivated. I'm intimidated. I'm overwhelmed. I have a hundred great ideas and I can't think of a single thing.

This should be a fascinating experiment.

Monday, August 07, 2006

Overheard at our house

Nana and I sat at the table drinking coffee.

Bud burst into the room with a flourish, announcing "Now I will dance my special dance: Chinese Applefarm!" and launching into a complicated dance routine.

Nana looked at me over the rim of her mug. "Did he just say Chinese applefarm?"

"Mm. Sesame Street. Grover. Dances from around the world."

"Applefarm?"

"It's actually Chinese acrobatics."

"Okay."

"Bud pronounces it applebatics."

"Mm-hm."

"Well, he's never heard of applebatics."

"Right."

"But he's heard of apple farms - we visit one every fall."

"Chinese Applefarm."

"Exactly."

"Not even wrong."

"Not even wrong."

Sunday, August 06, 2006

Creative autist

Creative. Flexible. Willing to improvise.

They're not the first descriptors that come to mind when you think about autism, are they? And yet, Bud is all these things. He has always had great pretend play skills and an active imagination. He rarely tires of toys because he continually finds new ways to play with them. When he wants to play-act a particular scenario and he doesn't have the right equipment, he will happily find a way to use whatever he's got. Want to play Little Bo Peep but find yourself short on sheep? No worry: toy dogs and elephants can fill the roles and learn to say "Baaa." What? No Bo Peep doll? The Fisher Price farmer would be happy to step in. At the beach with no toys on hand? This big rock can be Bo Peep; these twigs can be the sheep.

I was surprised, then, when Bud approached me the other day and asked me to help him make the dancing bear from a favorite Teletubbies segment. I knew that if he wasn't content just swapping out a different toy to create the scene, then he must have had a particular image in his head and he was certain that I could deliver. I, on the other hand, was less certain of my abilities.

I was familiar with the segment, of course. In it, a cylindrical circus-tent looking object drops from the sky into Teletubbyland:

The Tubbies gather around to watch as the sides of the tent part and a little bear emerges wearing a hat and vest, carrying a cane, and dancing a soft-shoe:

"I need the dancing bear and the tent," Bud told me. "Can you help me make it, Mom?"

"I'm not sure how to make it, Bud," I said.

"With paper," he said. I was resistant and could not imagine what he was envisioning. I found a little toy bear among his collection and hoped that it would be enough to satisfy him. It wasn't. He clearly had something else in mind.

"Okay, Bud," I said. "Tell me what you want me to do." And he did. One step at a time, he told me what we needed to turn this plastic bear into the magical dancing bear and I scoured the kitchen drawers to find supplies that would do the job. Twist-ties from the bread became the requested hat and cane. A torn paper towel became a vest.

"He needs shoes, Mom," Bud said. I ripped tiny pieces of blue painters tape and stuck them to the bear's feet. Bud thought it was a perfect solution.

"Now the tent, Mom," he said, once again walking me through the stages. We didn't have a picture in front of us, so I just followed his directions about what it was supposed to look like. I don't know what sort of picture he had in his mind when we began, but he grew more and more delighted with each completed phase of construction.

In the end, our collaboration yielded this:

Bud is thrilled, and has had the bear performing all weekend.

I don't know for sure, of course, but with this sort of innovative vision, eye for detail, and collaborative work style I'd say that Bud's got a promising future in the film industry; I'm guessing Production Design. And it looks like we've got our first entry for his portfolio.

Friday, August 04, 2006

The more things change

I've been scrambling to find a new autism specialist because the developmental pediatrician who's been working with Bud for the past four years is moving out of state. I was nervous about it because we live in a small, rural town and I'd heard that this pediatrician was the only autism specialist in the local area. Luckily, though, my investigations turned up what appears to be a fantastic child development clinic on the other side of the state that takes a team approach to assessment. The team is led by a developmental pediatrician and includes an OT, PT, and SLP, in addition to other specialists. Their assessment includes time in the clinic, a home observation, and a school observation, and seems like a perfect way to get a "where are we now" snapshot. Their wait list is long, but the woman I spoke with said she would pencil us in for early spring as long as we returned their intake paperwork as soon as we got it. It was an easy promise to make before I saw their daunting paperwork, full of questions that challenged my fuzzy memory - when did he first sit independently? drink from a cup? say a word?

So today I trudged up to the attic to pull out copies of the paperwork I completed when Bud was 2 years old and we were just beginning with Early Intervention. As I sorted through five-year-old paperwork I found the notes from his first assessment with the EI team. I remember the meeting well. I remember being delighted to open the door to find that the team was a group of warm, friendly, engaging women: Bud's target demographic. I remember sitting in a line-up on the couch - my dad, my mom, my husband, me - as we watched the already charming but still nonverbal Bud flirt with the team and revel in their attention and affection. I remember the four of us tag-teaming our answers to their questions:

"How would you describe his strengths?"
"He's very affectionate" - "Loving" - "He's flexible" - "Adaptable" - "He adjusts well to new people and places" - "He's very social" - "He plays well" - "He sleeps well" - "And eats well" - "He's so much fun" - "He's happy."

"What concerns do you have?"
"He's not talking" - "He doesn't react to pain" - "It doesn't seem to register" - "Not even when he bangs his head really hard" - "He doesn't point" - "He doesn't follow a point" - "It's hard to direct his attention to something" - "He seems to get overstimulated easily" - "He runs laps around the house when he's excited."

"And what would you most like to change about Bud?"
Uh -

The four of us sat upright, barely breathing, shooting glances at each other from the corners of our eyes. Of course, I thought, that's the point of Early Intervention, isn't it? We're supposed to want to change something. Of course that's it. I should have thought about this. I should have been prepared for this. How can we possibly qualify for Early Intervention if there's nothing we want to change?

The silence was going on too long; I could tell by the way the team members were looking at each other.

"Well, you know," I said. "It would be good if he could talk. I mean, I hate to think about him being frustrated that we don't understand him."

"Okay, good. So he seems frustrated?"

"Well... no."

"It would be good if he followed a point," offered my mom.

"And the pain thing," I said. "He could really hurt himself and we wouldn't know it."

We were crashing and burning.

It was Bud's dad who jumped in to clarify for the team. "See, the thing is," he said, "We just think Bud is perfect. You know, even if he's behind, he's perfect. He's the perfect Bud. And that's all we really want him to be."

They smiled and nodded. We exhaled. Bud qualified for Early Intervention.

So now, five years later, as I'm filling out the lengthy form for this new assessment I am mentally preparing the answers to the questions I assume this new team will ask as well. It's interesting to note how much has changed.

Some of the answers to the first two questions, his strengths and challenges, have swapped places; others have stayed the same. Bud still plays well, but now he has difficulty sleeping; his anxiety is high in social situations and he'd usually prefer to stay home than go to a public place; his language is still not typical, but he is able to communicate well; he has appropriate responses to pain; he points and follows a point and is increasingly good at maintaining joint attention; he's often fearful of new people and places; he still runs laps when he's overstimulated; he's still fun; he's still happy.

And that third question? The one about what we'd change? I don't have an updated answer to that one. Bud is still perfect.

Luckily, some things never change.